Eliminating stigma in practice

For Pamela Wood, receiving a diagnosis of hepatitis C came as a serious shock.
 
‘It just turned my world upside down, really,’ she told newsGP last year.
 
It turned out she had contracted the blood-borne virus (BBV) during a brief period in her teens of experimentation with intravenous drugs, which seemed a lifetime away – but now had an enormous pull on her present.
 
‘Everything else in the world was just the same; I still had four children, I still had a husband, I still had a business to run, I still had school committees, all these other things that I was involved with,’ she said. ‘But for some reason, my life felt very defined by that very small period of time when I injected drugs.’
 
It took Pamela a long time to come to terms with her diagnosis, and even longer to confide in her family and selected friends. Some were accepting, but Pamela did experience stigma and discrimination – and sometimes, in the very places she most needed to seek assistance.
 
‘Certainly one of the biggest places where I experienced [stigma] was within the healthcare system,’ she said.
 
Some incidents were dramatic, such as the time when an anaesthetist who had neglected to put on gloves while he inserted a cannula yelled at Pamela for not informing him about her BBV beforehand.
 
But Pamela found that usually, the discrimination was far more subtle.
 
‘You tell people you have hep C and you see the rolling of the eyes, and next is nearly always “How did you get it?”’ she said.
 
‘That’s always the first question, and quite often there’s a subtle change in the way you’re treated and the way that people react to you; and they’re harder things to put your finger on.’
 
Pamela has had situations in which she withdrew from receiving healthcare because of the responses she has received from medical professionals, and according to Associate Professor Louise Owen, a sexual health physician and Vice President of the Australasian Society for HIV, Viral Hepatitis and Sexual Health Medicine (ASHM), she is not alone.
 
‘We know that when people experience or perceive stigma and discrimination, they often either leave a service before being seen or are lost to follow up because they would not return,’ she told newsGP.
 
‘In some cases, even the fear of being stigmatised or discriminated against, based on the experience of others, can result in the person failing to seek healthcare at all. In other cases, people may hide information, they may not complete new patient forms or may not tell a clinician relevant information for fear of being judged or treated differently.’
 
Dr Michael Burke, a GP and Board Member of ASHM, has seen the effects of stigma and discrimination on some of his own patients.
 
‘Recently two of my patients have had difficult experiences,’ he told newsGP. ‘One has given up taking an important medication because of his perceived stigmatisation by health workers. Another has twice had a medical practice refuse to see her because she lives with a medical condition that has been stigmatised.
 
‘Both of these patients have difficult social circumstances. To have their access to needed treatment either blocked or made more difficult by stigmatisation only further risks and damages their health, stresses them and makes their lives even more difficult.’
 
Associate Professor Owen has found that practitioners, and even practice processes, can perpetuate stigma and discrimination without even being aware of doing so.
 
‘Sometimes this is done through policy and procedures in the healthcare setting, such as marking a patient’s file with a different type of code or colour, or by making questions on a new patient form compulsory, which means the receptionist or others will see the information rather than waiting to see the person and asking them privately,’ she said.
 
‘Other practices that can perpetuate bias include scheduling people with a BBV last on the day’s list, placing them in a separate waiting area to other patients, or making assumptions about a patient based on known or suspected current or past behaviours, such as withholding pain medication because of known past drug use.
 
‘Visual cues in or around a practice can also perpetuate bias, for example, if all the messages are overtly heterosexual, it can inadvertently send a message that gay men, same-sex couples or transgender people are not welcome there.’
 
Associate Professor Louise Owen has helped to develop e-learning resources designed to help practitioners eliminate or reduce stigma and discrimination from their practices.

It can be hard to look at old ways of doing things with fresh eyes and identify areas in which positive change could be made. But a new resource, called Removing Barriers, has been developed by AHSM and funded by the Department of Health to help healthcare practitioners and their practices to do just that.
 
‘Removing Barriers is a website that hosts a range of published evidence on the negative effects stigma and discrimination has on the health of people with BBVs,’ Associate Professor Owen said.
 
‘It also hosts online training modules for receptionists, practice managers, nurses and students on health-related courses. The e-learning is appropriate for any healthcare setting.’
 
Removing Barriers’ learning resources, which are free to use, are designed to raise awareness of unconscious bias in use of language and policy procedures, and help practitioners and their staff learn how to make their practice more welcoming for patients who may often experience marginalisation.
 
‘We would love GPs to encourage their reception staff, practice management, nursing staff and even students to do the learning modules, and we hope that people completing the modules would take the opportunity to then look at their policies and procedures and make changes to eliminate, or at least reduce, instances of potential stigma and discrimination,’ Associate Professor Owen said.
 
She believes the benefits of doing so are clear.
 
‘People who feel their healthcare space is friendly and safe are more likely to engage with health services, attending follow-up services and accessing the care they require,’ Associate Professor Owen said. ‘This would improve not only the medical condition in question, but also encourage return visits for other health concerns.’
 
In Dr Burke’s opinion, eliminating discrimination would also benefit practitioners, particularly GPs.
 
‘Health professionals who provide non-discriminatory medicine, especially GPs, would feel in turn more supported by their colleagues,’ he said.
 
‘The health and welfare of GPs can be better ensured if the profession as a whole shares the burden of care for patient groups who wrongly experience stigma and discrimination.’

Barriers to healthcare BBV Blood-borne viruses Healthcare education Hepatitis C Removing Barriers Stigma and discrimination